Dermato­myositis

Dermatomyositis is rare and can be difficult to diagnose. It can be mistaken for other skin or autoimmune conditions like lupus. It’s one of a group of diseases called myopathies, which all cause muscle inflammation but differ in other ways.

If left untreated, dermatomyositis can severely damage your muscles. You also can have constant rashes (heliotrope rash) on your face, hands, chest, back and legs. It can make you feel so tired and weak that even walking across a room may be more than you can do. That’s why finding it early and getting treatment as soon as possible are important.

What to expect at your first visit

When you first meet with us, we’ll ask you to share what’s been happening. We’ll ask a lot of questions and do a lot of listening. Our questions may include:

• What kind of symptoms are you having?
• When did your symptoms start?
• Have your symptoms gotten worse?
• How are your symptoms affecting your life?
• Have you been diagnosed with any other health conditions?
• Has anyone else in your family had a condition like this?

Your provider will also do a physical exam and order some tests. Dermatomyositis is usually diagnosed through blood tests and biopsies of your muscles and skin.

Blood tests

Blood tests check for increased muscle enzymes, which are a sign of muscle damage. We also look for autoantibodies in your blood, a sign your immune system is reacting to something it sees as a threat.

Biopsies

We may take a skin biopsy of any rashes. Your provider may also recommend a muscle biopsy to check for muscle inflammation. These samples go to our lab where experienced pathologists look at them under a microscope.

Other tests

Dermatomyositis can damage organs in your body, like your heart and lungs. Your provider can look for this kind of damage using tests like:

• MRI (magnetic resonance imaging).
• Chest X-ray.
• Pulmonary function tests.
• Chest CT scan (computed tomography scan).

They may also do a test called electromyography (EMG) to see how your muscles and nerves work and find any damage.

Meet Our Dermatomyositis Team

If you choose to get care at Cleveland Clinic, you’ll get a care team of providers from different specialties — all familiar with dermatomyositis. We build this team based on your unique needs and treatment goals. This team works together to quickly diagnose your condition and start a highly personalized care plan. Your team may include:

• Rheumatologists.
• Dermatologists.
• Pulmonologists.
• Pathologists.
• Physical therapists.
• Occupational therapists.
• Speech-language pathologists (SLPs).

Your care team will work with you to create a treatment plan that focuses not just on your test results, but also on you and your specific needs. We look for treatment options to help reduce your symptoms and strengthen your muscles. Often, dermatomyositis symptoms can improve within a few months of starting treatment. Your treatment may include:

Medications

We may prescribe a combination of medications to lessen inflammation and slow down your immune system, like:

• Corticosteroids: Lessen inflammation.
• Immunosuppressants: Slow down the immune system.
• Intravenous immunoglobulin (IVIg): Reduces muscle and skin damage.

Other treatments

Because dermatomyositis affects muscles and movement, your provider may recommend speech, physical and occupational therapy.

Ongoing care

Dermatomyositis is a lifelong condition — and requires a long-term commitment to your health. Having dermatomyositis also raises your risk of developing certain types of cancers. We do regular cancer screenings to make sure we catch any tumors early on when they’re easier to treat.

To manage your symptoms, it’s important to keep up with follow-up care, like:

• Doing therapy exercises.
• Taking your medications.
• Going to follow-up appointments.
• Keeping up with regular screening tests.
• Avoiding UV exposure and using sunscreen.

Taking the Next Step

Hearing you have a chronic health condition like dermatomyositis isn’t the easiest news to get. But one thing is certain — you want to find providers who have experience treating this rare condition. Cleveland Clinic has you covered. Our expert healthcare providers are by your side, from the moment you book that first appointment through follow-ups — and lifelong care.